More CF Treatments Being Developed

Spring is in the air!  Yeah for warmer weather, but yuck for allergy season!

My doctor appointment went ok in March. My PFTs were around 89, I believe, which was lower than the last time, but I was not feeling well during the visit.  Everything else was good though.  Praise God!

The Docs switched my pancreas enzyme medicine from Pancreaze to Creon due to insurance demands.  I was nervous about the change since I had been taking it probably over 10 years, but fortunately, I haven't really noticed a difference since I started a few days ago.  So that's great. 

Recently in CF news - Robert J. Beall, Ph.D., President and CEO of the Cystic Fibrosis Foundation sent an email out stating: "The Foundation has announced a $14 million expansion of its research agreement with Genzyme, a Sanofi company, to support development of new treatments for people with the most common CF mutation, F508del. (I have two copies.)
 
The agreement will support research programs aimed at identifying compounds, known as correctors, that could potentially fix the underlying cause of the disease. During the expansion phase, Genzyme will focus on further developing select compounds to advance them into CF clinical trials."

This is more big news for CF patients! Keep the studies going and get those meds out to us!! Thank you to all those who do put time into studying and developing medicines that will help us live better lives. Also, thank you to those who financially support their efforts.

I wanted to encourage you to also help people like me and others with untreatable diseases to voice your support of clinical drug trials. The Improving Access to Clinical Trials Act (IACT) will expire in just 6 months! This important law allows those with rare diseases, like cystic fibrosis, to participate in clinical trials without fear of losing vital health benefits.

Members of the House and Senate have introduced the Ensuring Access to Clinical Trials Act of 2015, which would remove the expiration date from IACT and allow it to become a permanent law. Please tell Congress to Pass the EACT ACT! (click that phrase).

Have a wonderful weekend my friends!

Link to Full Blog: Jen's Breath of Life Blog
Send private messages to Jen in the "Contact Jen" section on the right.

Oh Summer, Where Art Thou?

First of all…. I’m behind on posting!

Back in December 2014, the CF Foundation announced a $15 million research initiative with biopharmaceutical company Shire which will support the development of a new cystic fibrosis treatment targeting the underlying cause of the disease.

This is a BIG deal and oh so important! Praise the Lord!

Members of the House and Senate have introduced the Ensuring Access to Clinical Trials Act of 2015, which would make permanent a law that allows those with rare diseases, like cystic fibrosis, to participate in clinical trials without fear of losing vital benefits. However, the act is set to expire this October! As a result, the CF Foundation urges people to make their voices heard in order to help make the Act a permanent law. Please click the link below to let the people who run this country know how important this is for many people!

Link: Help Support the Act!

As innovative new treatments are developed, it is vital that all people with CF and other rare diseases, have the ability to participate in clinical trials without fear of losing their benefits.

Now, as for me and my health lately... well, winter stinks and I can’t go outside.  So as soon as the weather breaks and the sun is shining again, I’ll be out there soaking up the sun! (Maybe that will help my Vitamin D deficiency…).   

I’ve been coughing pretty rough in the morning for a few hours then it seems to calm down some.  I’ve been keeping up with my Pulmozyme Nebulizer treatments and Vest treatments daily (go me!).  Staying away from sick people and places seems to be helping some too.  Kids this year seem to be sick all the time!  Sorry I haven’t seen some of my family or friends lately because of it… L.

My last appointment was supposed to be in February, but due to the weather’s behavior, I had to reschedule for March.  Hope I don’t catch a cold from being there when I go!

As usual, thank you for taking the time to read. I appreciate the thoughts, prayers and messages. 

Patiently waiting for summer,

Jen

Yuck...

The title of this entry describes how I feel.  The day after Thanksgiving I got "sick". 

It started in my nose then by Sunday was in my lungs. I've coughed so much and so hard these last few days it really hasn't been fun. Thankfully, I called the afterhours emergency CF number and a doctor was able to call me in an antibiotic (Cirpo 750mg for 14 days) so I will be taking my 3rd pill in a couple hours. I'M SO GLAD I DIDN'T WAIT TO CALL ON MONDAY. 

I think I'll be taking a pain reliever too. I'm not sure how to describe the pain when I cough so much and so hard but I guess one way to describe it is that my whole upper body tenses and cramps up each time I cough so when I'm having a coughing fit, my muscles don't get to relax and they become very sore...Kind of like making my lungs do 100 push ups every hour or so. I've been wheezing a lot and I can hear rattling at times too. 

It's early in the morning now as I'm writing this (around 5AM) and I'm debating if I should go to work or not.  I have a lot to do this week, especially today. They are used to me coughing there and I'll be in a warm building so I'm thinking about going and at least trying to get some things done. Besides, I feel like if I sit around too much, the gunk will just settle more in my lungs. Maybe a half day of work is in my best interest.

Also, I recently found out that my enzymes will no longer be covered in 2015 under my insurance plan. It will cost $159,000+/year to pay for them out-of- pocket. Therefore, I'll be switching to Creon after my next prescription refill arrives soon. My doctors ensure me that there won't be much of a difference, but switching meds is a little intimidating to me.

I'm sure praying I feel better soon. I have a lot going on and I have play practice run through for the next couple weeks until opening. I know some of you just thought, "Oh she has plenty of time to get better", but this could actually last a while. I ask for your prayers that I am able to recover quickly.

God's got this. He will help me walk though this with all of you. Thank you for your continued prayers and support.

Doctor Visit Update

Monday I had a doctor appointment which went well. The doctors made some changes to help protect CF patients during their visit. For example, I was required to wear a mask to keep germs from going or coming out (if I were to be "sick"). The docs also wore thin cover gowns and gloves when they were visiting with me in the exam rooms. I understand the gloves, but the gowns I'm not really sure about... I appreciated the mask a lot.

My PFTs were good and about like they were at the last visit. With harvest season going on, I have extra gunk, if you will, in my lungs so that's why I think the score wasn't a little higher. I've been doing some extra curricular activities the last couple months which involve dancing and singing so that has really helped keep me active.  I've still been doing my VEST treatment and Pulmozyme nebulizer daily too. They also took a few gallons, I mean, tubes of my blood in order to review my vitamin levels and such.  It's been a while since that has been done so here's hoping for a much higher Vit D level than what it has been in the past! Maybe this will be a first in YEARS that my level is actually in normal range! My BP was "calm" and my Oxygen was about 98%. My weight was...wait a minute...not going there.  ha-ha

It's so wonderful to have something fun to do that helps keep you distracted from the other "stuff" in life for a while. The dancing and singing I'm doing makes me very happy even though my body sometimes is a bit sore afterwards.  It's all worth it!

As usual, thank you for taking the time to read my postings. If you receive this message via email, below is the link to the blog site if you wanted to read past posts or contact me via email (right sidebar of page). I'm pretty sure you can leave me comments too at the bottom of the post. Have a blessed Fall!

Full site:Jen's Breath of Life Website

Must Be Harvest Time...

This last month has been a whirlwind! I’ve been super busy with lots of things. And now that the weather is changing and harvesting is happening, I am feeling it.  My left ear clogs up during harvest and planting seasons for some reason.  Fortunately, it doesn’t hurt, I just can hear well! Last night I went to bed at 8:20pm. The weather radio went off sometime in the night regarding possible flooding issues, but I just threw a pillow over my face and went back to sleep.  Coughing is happening a lot too. My throat muscles even feel tight like I have a “lump in my throat”. I’m hoping I’ll feel better over the weekend. 

I have a doctor appointment coming up soon so we will see what they say. If I’m not feeling better by Monday, I guess I’ll call them and see if I can get meds. Yuck! That stuff makes me feel worse sometimes and I can’t eat dairy with it. I like me some dairy…. :)

Please pray for me to get better and to keep a positive attitude. Feeling sick year round and then having it get worse for weeks/months at a time is exhausting. Anyone who suffers from an unending ailment can relate. Sickness is hard for a “healthier” person to deal with, but it’s even harder on me to keep going to work and keeping up with everyday activities/duties. I labor at breathing more and I usually just don’t feel well.  Making time for breathing treatments, medicines, vitamins and exercise is important and sometimes hard to fit it all in with everyday life.

Anyway, thank you for reading and thanks for prayers. Send me a message anytime from my blog page or email me directly if you have my email. I love hearing from you. I will hopefully update again soon.

"Be patient toward all that is unsolved in your heart, and try to love the questions themselves. Do not seek the answers that cannot be given you because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer." - Rainer Maria Rilke